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Caregiver Support

With the overwhelming number of options offered for treatment, deciding on what course of action to take can be difficult, especially if the decision involves a child. From medication to diets, vitamins to occupational therapy, cognitive-behavioral techniques to biofeedback training, and intervention techniques it is hard to decide what to try, let alone what is effective. Here are some tips on how to evaluate treatments and establish research principles to apply at home.

Most individuals with an ASD respond well to highly structured, specialized programs. Guidelines used by the Autism Society of America include questions to ask about treatments, such as:

• Will the treatment result in harm to my child?
• How will failure of the treatment affect my child and family?
• Had the treatment been validated scientifically?
• Are there specified assessment procedures?
• How will the treatment be integrated into my child’s current program?

The National Institute of Mental Health suggests a list of questions for parents when planning for their child:

• How successful has the program been for other children?
• How many children have gone on to placement in a regular school and how have they performed?
• Do staff members have training and experience in working with children and adolescents with autism?
• How are activities planned and organized?
• Are there predictable daily schedules and routines?
• How much individual attention will my child receive?
• How is progress measured?  Will my child’s behavior be closely observed and recorded?
• Will my child be given tasks and rewards that are personally motivating?
• Is the environment designed to minimize distractions?
• Will the program prepare me to continue the therapy at home?
• What is the cost, time commitment, and location of the program?

 Do Your Homework and Read Up

Research proposed treatments from reliable sources. Consult professionals and other parents. Ask others for their information sources. Make sure not to put too much faith into other parents’ enthusiasm if they’ve only just started a new treatment. Beware of hype. Most treatments will require payment, but take into account if claims are being made by people who are trying to sell a treatment. Apply the same consumer instincts for making judgments about autism treatments as you would about any other purchase, and be cognizant that desperation may be viewed by some as a business opportunity.

 Get a Baseline

Make sure there is a starting point. With the desire to continually try treatments until there are observable results, there is a tendency to lose sight of where you started. You forget what your child looked like when there were no interventions at all. Begin by taking notes and keeping good records. Take videos of your child in their natural environment to help document their behavior. For example, to know if a child is really having fewer tantrums, document how many tantrums there were before, how severe they were, and how long they lasted.

 One Step at a Time

Anxious to help your child, you might try a new diet, a new medication, and a new therapy all during the same week. If there is improvement, it will be difficult to identify the cause for the success. Likewise, if anything should begin to go wrong, there is no way to tell which of the interventions is responsible for that negative effect. The best method is to start new treatments one at a time so that the positive and negative impacts of that particular treatment can be clearly observed.

 Natural Development Counts

Because autism is a developmental disorder, small gains made over a long period of time may be due less to a certain treatment and more to the natural unfolding of human development. It is important to recognize that a child might have continued to make gains, on whatever delayed time table, even without any intervention. The difficultly comes in determining if they gained more thanks to the intervention than they would have if left on their own.

 Understanding There Will Be “Good Weeks and Bad Weeks”

Children with an Autism Spectrum Disorder (ASD) go through cycling (good and bad periods) no matter what treatments they are on. These natural ups-and-downs can make it difficult to discern the true effect of a treatment. The trick is to separate out how much improvement is due to this natural cycling towards a "good week" or a "good month" and how much improvement, if any, is actually due to the intervention. Over time, parents develop a sense of their child's cyclic pattern and thus can adequately assess the effectiveness of any new intervention.

Many factors can influence the treatment of persons with an ASD, including time of day, month, or year. The winter can lead some to feel more depressed, or the irritability associated with a woman’s menstrual cycle can impact an intervention’s effectiveness at any given time. The timing of an intervention can interfere with the assessment of true treatment effects.

 Be Observant

There are countless other factors that interfere with the measurement of the true effectiveness of an intervention. Examples include:

• The child’s attitude toward the teacher, doctor, or therapist providing an intervention. Be aware that your attitude may impact the child's cooperation and outcome.
• A new treatment may increase parents' hope and decrease anxiety, such that a mother and father get along better and deal with their child more consistently. The change in the parents’ behavior may result in the child may start having fewer tantrums, and not because of the treatment itself.
• A child’s status is dependent on who gives the information on a survey or checklist. The perspectives of mothers, fathers, and teachers may differ substantially from one another.

 

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